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Take Action Virtually with our White House Protest
AIDS, ME/CFS & Long COVID activists demand Biden, Congress fund pandemic plans
On World AIDS Day, We’re Taking Action at the White House
White House Must Confront Global Health Nightmare of Colliding Pandemics
Infection-associated chronic disease experts needed at ARPA-H
Congress launched ARPA-H (the Advanced Research Projects Agency for Health) this past March to focus on high-risk, high-reward research
BOLD ACTION is a Commitment to Healthcare Justice for People with ME
BOLD ACTION to me, means mobilizing our community to publicly demonstrate our deep and intense—as opposed to shallow and
What Primary Care practitioners need to know about the new NICE guideline for myalgic encephalomyelitis/chronic fatigue syndrome in adults
Caroline Kingdon’s new paper on the NICE guideline for ME was co-written with #MEAction UK volunteer Adam Lowe, as
#MEAction Response to NY Magazine’s Egregious Article on ME and Long COVID
#MEAction has sent the following email to editors at New York Magazine to request it remove its fallacious article about Long COVID and ME.
#MEAction’s BOLD Press Strategy Leads to BIG Press Payoff!
Taking BOLD ACTION with our press outreach has led to national media writing about ME.
Interview with #MillionsMissing France: Rally in Bourges
#MillionsMissing France has been busy.
Ask your MSPs to sign motion S6M-06112 and support people with ME
At #MillionsMissing Scotland many MSPs pledged their support for people with ME, and now they have a chance to
Long COVID’s U.S. Economic Impact Est. $140-$600 Billion Annually
Post-viral conditions like ME/CFS provide guidance for estimating the economic impact of Long COVID.
New Diagnostic Codes for ME/CFS in the US ICD-10-CM
Code change will ensure US can track diagnosed cases of ME/CFS in newly created electronic health records
Members of the Scottish Parliament pledge their support for #MillionsMissing
On Wednesday 28th September, #MEAction Scotland led a successful #MillionsMissing demonstration outside the Scottish Parliament – the first time
#MillionsMissing 2022: Activism From Home Was Beyond Impressive
There has been so much happening since the #MillionsMissing protest on September 19th. We’ve shared some of our amazing
Tell HHS about your experience of healthcare discrimination
People with ME, Long COVID and other complex, chronic diseases have experienced all kinds of healthcare discrimination. Now there
#MEAction & Mayo win Grant for Diagnostic Improvement
Amazing news! #MEAction and Mayo Clinic applied for a grant together from the Society to Improve Diagnosis in Medicine to transform the diagnostic and treatment process at Mayo Clinic Rochester for people with ME/CFS!
DHSC release progress update.
DHSC has released an update on the progress of the work underway to support the development of a Delivery
#MillionsMissing Press Hits are Rolling In!
The press hits are rolling in! The media showed up in a big way yesterday to cover our #MillionsMissing
Protest at White House to Tell President Biden “Pandemic Is NOT Over”
Protesters disabled by Long COVID and myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS) lay down on the White House sidewalk today risking arrest to tell President Biden that the pandemic is not over, and that millions are being disabled from post-viral disease, including Long COVID and ME/CFS.
Americans Disabled By Long COVID and ME/CFS Protest Biden’s Claim that “Pandemic Is Over.”
Protesters disabled by Long COVID and myalgic encephalomyelitis (ME/CFS) are protesting at the White House sidewalk TODAY at 12 p.m. ET to say that the “pandemic is not over,” and to call on President Biden to declare Long COVID and ME/CFS a national emergency.
New date for #MillionsMissing Scotland
Following the postponement of #MillionsMissing Scotland, the demonstration has been rescheduled to Wednesday 28th September. #MillionsMissing Scotland will now
LONG COVID and ME/CFS Activists Plan Civil Disobedience Protest at White House on Sept. 19
The LONG COVID and ME/CFS community are planning a protest in front of the White House this Monday, Sept.
#MillionsMissing Scotland postponed
The #MillionsMissing Scotland demonstration, due to take place on Wednesday 14th, has had to be postponed. Following the death
#MillionsMissing London is Postponed
Due to the death of her majesty Queen Elizabeth II and the period of national mourning that we are
NIH Extends Funding for ME/CFS Research Centers
The National Institutes of Health (NIH) has taken steps to fix a “funding gap” in the timing of research
Virtual Actions For #Millions Missing London-Social Media Action and Letters/emails to Wellcome Trust
We are asking all our supporters, people with ME and people with other complex chronic conditions to lobby the
Protecting the Most Vulnerable: Complexities of Vaccines and Chronic Illness
It has been over a year since the COVID-19 vaccine became available, and a subset of people with myalgic
Ask your MSPs to join us at #MillionsMissing Scotland
Whether or not you can join us in person at this year’s #MillionsMissing, you can help to make it
How Dept. of Labor can better track disability from chronic illness
Earlier this month #MEAction collaborated with Patient-Led Research Collaborative (PLRC) to suggest changes that the U.S. Department of Labor
Facets of ME: Travel Tips
Welcome to August’s Facets of ME! If you are unfamiliar, #FacetsOfME is a new #MEAction feature this year where
The DHSC have released details of their process in the Development of a Delivery Plan on ME
On the 12 May, World ME Day, the former Secretary of State for Health and Social Care, Sajid Javid,
Severe ME Artist Project 2022 — Gallery
A collection of works by artists with severe ME.
Just In Time for the School Year: A New Pediatric Pacing Guide
#MEAction is excited to share a new and much-needed resource just in time for back to school! We are
An update on the Scottish implementation of the NICE guideline
As we announced in February, the Scottish Government has committed to implementing the new NICE guideline for diagnosis and
Dept. of Labor hosts dialogue on Long COVID in the workplace
The U.S. Department of Labor (DOL) has opened a national online dialogue on “Understanding and Addressing the Workplace Challenges
#DisabilityPrideMonth: Listen to The Century Foundation’s podcast Off-Kilter
As part of #DisabilityPrideMonth, The Century Foundation’s podcast Off-Kilter has been hosting a series of conversations featuring Disability Economic
New #MEAction Volunteer Survey
#MEAction is excited to announce our new Volunteer Survey! We invite everyone to complete the survey. The survey link
#MEAction Recognizes & Celebrates Pride Month 2022!
#MEAction recognizes and celebrates Pride Month! As a community that welcomes and encompasses all, this Pride Month, we asked
Top 10 ME/CFS Recommendations for the Long COVID National Research Action Plan
#MEAction has been hard at work continuing to advocate to the Department of Health and Human Services (HHS) on
Severe ME Artists Project 2022!
#MEAction is once again excited to announce our Severe ME Artists Project 2022 that will feature work from those
NEW YORK ACTION ALERT: NEED NY GOVERNOR KATHY HOCHUL TO SIGN ME/CFS BILL INTO LAW!
Dear New York Community- We need urgent action now to persuade New York Governor Kathy Hochul to sign our
Facets of ME: Temperature Dysregulation
Welcome to June’s #FacetsOfME! Facets of ME is an educational feature where we dive into a particular aspect (or
Dept. of Labor Updates Information on ME/CFS for Workers, Employers
The U.S. Department of Labor’s Office of Disability Employment Policy (ODEP) has updated the information on ME/CFS provided at
#MillionsMissing: 7 Days in Self Portraits with ME/CFS
After taking #MEAction’s photography workshop with photographer Lucia Doynel for #MillionsMissing, Terra Dumont produced these stunning photos as a
U.S. Healthcare Coding Revisions Enable Tracking of ME/CFS Cases
Since 2015, the 1-2.5 million Americans with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) have been effectively nonexistent, at least as
We can’t believe it! Another $50k matching gift!
I am so thrilled to tell you that we have another $50,000 (£39,873.50) matching gift for #MEAction’s #MillionsMissing fundraiser.
Email Doctor Unger about the Misinformation at CDC
People with ME deserve accurate & clear ME/CFS education from the Centers for Disease Control, not recycling of discredited
#MillionsMissing: Videos Created by our Amazing Community
This year’s #MillionsMissing, our community created some amazing videos that we are privileged to highlight. This is just a
#MillionsMissing MAY 2022 Wrap Up
Thank you for sharing your stories, for illustrating our common thread so that our governments, healthcare systems, and other
New T-Cell Research at the University of Massachusetts
#MEAction’s Director of Scientific and Medical Outreach, Jaime Seltzer, sat down with Dr. Liisa Selin, MD, PhD, and Dr.
Exciting news about Mayo Clinic!
We’ve got some very exciting news this week! Clinicians working at the Long COVID clinic at Mayo Clinic’s campus
New Volunteer Leadership Program Led by Experts!
We are thrilled to announce that Chimére Smith and Terri Wilder will be joining #MEAction as consultants to execute
Research Update: The NIH Intramural ME/CFS Study
National Institutes of Health researchers who began what may be the deepest biological investigation ever of myalgic encephalomyelitis/chronic fatigue
#MEAction Meets with the Department of Labor
#MEAction continues our advocacy for the #MillionsMissing in a recent meeting with the Office of Disability Employment Policy (ODEP)
#MEAction Scotland holds its first community call
Last week, #MEAction Scotland volunteers held the first in a series of community calls. The online meetings will take